How can research funding be generated so that the very ill and financially depleted ME/CFS patients do not have to pay for it themselves?
Following is one patient’s response to a recent letter from ProHealth founder Rich Carson & Patient Advocate Courtney Miller (You Can Make a Difference) asking for ME/CFS patient contributions to help fund the Simmaron Foundation’s flagship NK cell dysfunction study.
To Rich Carson and Courtney Miller:
I’ve been thinking of this request and have finally realized why it offended me.
I’m wondering how many cancer patients have been asked to donate their own money to cure themselves and others. I doubt many, if any.
Seems like the cancer ‘industry’ focuses on public awareness and fundraisers instead of asking the ill to basically pay to heal themselves. There’s already a big burden on Fibro/ME/CFS patients to do this themselves.
Insurance doesn’t pay for many of our required or desired medical care/treatments; or for the practical aspect of our daily physical needs. For example:
• Insurance doesn’t pay for someone to clean our houses, or do our grocery shopping / cooking / cleaning – these all come out of our own pockets.
• As do ‘experimental’ (aka, non-FDA approved treatments, which have been acceptable in many other countries for many years).
• Insurance companies also do not cover massages, and some not even chiropractic, or only minimal chiropractic visits.
• Additionally, insurance doesn’t cover the multitude of supplements that we should all be taking – or at least trying – according to many doctors specializing in Fibro/ME/CFS and your website, among others who focus on the Fibro patients.
May 12th is National Awareness Day. But I first heard of it last year, on the day, so I couldn’t really do much in the way of advising my doctors, chiropractic, massage therapist, etc. so they could make all of their patients aware through bracelets, informational signs, etc.
• Where are our fundraising ‘walks,’ and other fundraising events to help us and make others aware of our plight?
• What is our ‘color’? [And is this generally recognized?]
• Why do we get ‘a day’ and not a full month, like many cancers?
• Where are our commercials (not pharmaceutical – which commercials are basically un-informative, incorrect and aggravating)?
With all of the out-of-pocket costs Fibro/ME/CFS patients incur to basically treat themselves and get the necessary domestic assistance, how can we also fund our own research?
• I know I don’t have any money left at the end of the month, and am foregoing many of the treatments / care / assistance / supplements I would like to be taking advantage of.
• I know I pay thousands and thousands of dollars per year to take care of myself and try to heal myself, or to pay health care professionals.
My income is limited to SS and an annuity from my Worker’s Comp claim years ago. Luckily for me, my husband is gainfully employed, but many of us are not so lucky. A great number probably don’t even get the income that I, personally, receive. I’ve been lucky and blessed, but I still can’t afford to pay the bill for research.
I would challenge you and your staff to research how to get the word out to the general public (not just the government and patients – though that’s good), and seek out fundraising opportunities, assistance and the like.
I spend much time researching ways to help myself; I can’t also spend time researching how to get this accomplished.
I appreciate you hearing me out. I know your company helps fund research and that is greatly appreciated, as well as the e-mails providing helpful, up-to-date information.
I’m forwarding a website I found concerning the Fibromyalgia Awareness Day, which gives info on how to participate in / organize a fundraising walk, and perhaps other fundraising opportunities.
Thank you – L